Soft Cleft Palate success!

[rchrist@lifeway.com]

My name is Rebecca. My son Blake was born with a cleft of his soft palate. I wanted to post something that was upbeat. It seems most of what I have read has been so pessimistic. A child with a cleft is not the end of the world. I like to think of them as a special blessing.


We had no idea until his birth that my son had a cleft soft palate. The nurse in the delivery room found it. Horrible thoughts ran through my head after hearing this news. We had just gotten to know a couple in our church that had a son with a cleft lip and palate and he had just had his lip surgery. In my mind that was what I was seeing, even though I had already seen my son and new his lip was not affected.


We started with a haberman feeder in the hospital. But my son had enough suck that we were soon able to switch to a regular bottle. We tried so many nipples until we found the right one. We used Evenflo's preemie nipple. Once he started taking the bottle normally, it was easy to forget he had his cleft, accept for the spit up coming out his nose. And he had a very intense sucking noise! And when he started eating solids it was frightening at first. Every bite came back out his nose. I called the mother of the cleft child in our church and she reasurred me it would get better. And in no time at all we were laughing at him sneezing the food out of his nose. To us it was as if it was normal.


Then the ear infections were another issue. My son had fluid behind his ear drums since he was 2 months old. And of course a few infections. So at 6 months he had tubes put in. And we are so glad we did. If we had not put in the tubes, his ear drums could have burst. Now, ear tubes are not the end of infections, but they do allow them to drain and you can treat them easier with antibiotic ear drops. And we have a wonderful ENT!


We have a great plastic surgeon and he reassured us that Blake's surgery would be harder on us than on him. And he was right. Last week on Dec. 13 my son had his surgery to reapair his soft cleft palate. It was big hairy deal for us, and the first few days were very trying. Nothing can prepare you for giving your young child up for surgery. But within the week, Blake was taking his bottle like a champ again!


We are fotunate that our experience with Blake has gone so well. But alot of it has to do with the attitude of the parents. We tried to be laid back and just deal with what came our way instead of getting bent out of shape. Most people would gasp when they saw formula coming out his nose. We would just wipe it away and go on. Blake is our first child, so we really did not know any different. And we did not let it bother us. Babies can sense tension and discomfort in their parents, so just relax if you have a cleft baby. They will be fine! You on the other hand are another story............!


If anyone has any questions about our recent surgery of the soft cleft palate, please feel free to email me directly at rchrist@lifeway.com


Rebecca

[gwen.brantner@halliburton]

I'm looking for any information regarding a short palate. My daughter recently had her adenoids partially removed and the surgeon said that she has a unusually small palate and recommends surgery. At this point, she has not been diagnosed with submucous cleft. I am trying to do research to prepare for her follow visit.


Thank you.

[Kim Handley]

Thanks for your story. I have read so many bad stories, it was nice to hear something positive. My son is going to be 6 months old in a few weeks, and we are going to schedule his surgery in two weeks for repair of the soft palate. While I am excited, and I am very nervous as well. I would like some more info on what to expect post-op.